Bill > S0474

This bill establishes a Rare Disease Advisory Council within Rhode Island's Department of Health to provide comprehensive guidance and support for individuals with rare diseases. The council will be composed of 14 diverse members appointed by the governor, including patients, caregivers, healthcare professionals, researchers, and representatives from various state agencies and organizations. The council's primary responsibilities include conducting public hearings to understand rare disease patients' needs, providing testimony on legislation, consulting experts to develop policy recommendations, researching healthcare access and coverage challenges, establishing emergency care protocols, evaluating newborn screening programs, publishing resources, identifying research opportunities, and developing educational materials for healthcare providers. The council will be required to submit annual reports to the governor and legislature detailing their activities and recommendations, with initial meetings occurring monthly in the first year and quarterly thereafter. For the purposes of this bill, a rare disease is defined as a condition affecting fewer than 200,000 people in the United States. Council members will serve three-year terms, with initial members potentially serving up to four years to ensure knowledge continuity, and all meetings will be conducted transparently with public input opportunities.

Health and Social Services

https://status.rilegislature.gov/